Raising and educating kids with dyslexia

Posts tagged ‘diagnostic testing’

It seems we equate being able to read with intelligence. Maryanne Wolf raised this notion in the recent HBO documentary Journey Into Dyslexia. This does not make sense. What I could understand more is if we equated being able to read with being educated. But, even that’s not true.

HBO’s synopsis of Journey into Dyslexia quotes a recent poll that indicates eighty percent of Americans equate dyslexia with mental retardation. Mental retardation is a very loaded term. On one hand, the term implies a lack of intellectual ability to learn or the lack of skills for daily living. On the other hand, the term is used to make fun of other people. The term should not be used, especially to label a person. Perhaps it was used in this instance deliberately, because it is charged with meaning and it does get a reaction.

Instead, adults and children need to be fairly and honestly educated about dyslexia. On the surface, someone who is dyslexic may look like they do not have intellectual ability. Cognitive testing reveals that, with dyslexia, the ability to read has nothing to do with intelligence. I can vouch for this because testing, using the Wechsler Intelligence Scale for Children (WISC), has shown that my dyslexic children are intelligent and have well above average IQs. So, let’s get it out there – dyslexic people are intelligent. Brain research has found, and the HBO documentary Journey Into Dyslexic testified to this, that reading in people with dyslexia activates areas of the brain that are different from the area of the brain usually activated by reading in people without dyslexia.

We should equate knowledge, learning more and not making assumptions about dyslexia with intelligence and being educated.

The following is an interview with my dyslexic son following his three-hour assessment at the Gabrieli Lab in Cambridge, MA to assist in their research on reading and the dyslexic brain:

G: Mom, why don’t you blog about my testing.

Mom: Okay. How was the testing? What did you do first?

G: I forget! Oh, they asked me which hand I wrote with and which hand I used for my fork and which hand I hold a spoon in. I was mostly right-handed but I was in between right and left for some things.

Mom: Did they ask if your parents were right or left-handed?

G: Ask Dad because he had fill out a packet.

Mom: Then what?

G: She [The technical research assistant] took me to a room. There was a board with numbers placed randomly. I had to connect the numbers in order. Then I did the same with the alphabet and then I had to put numbers and letters together – like 1A, 2B. It was difficult. That took a while.

Mom: Then?

G: We did regular testing like I’ve had at school. I had to read words. I had to tell her a sentence for what the person was doing in a picture.

Mom: How long did that take?

G: That took a while. There were many different things.

Mom: Then what?

G:I had to spit in a cup.

Mom: Did she tell you why you had to do this?

G: No

Mom: She didn’t say anything about it? Did you know what it was for?

G: Yes, DNA.

Mom: How did you know that? [Dad interjected at this point saying the research assistant had explained the spit was for DNA when they arrived for the testing.]

G: She told me she got spat on by tons of five year olds. She gave me an easy story to read. I read it and she timed me. At the beginning I had to read as many words as I could.

R; How well did you do?

G: Pretty good. I also had to answer yes and no questions. I got them mixed up.

Mom: What do you mean?

G: Does March come before June?

Mom: Does… you got that wrong?

G: Yes, it was confusing.

Mom: That’s fine. Was that the end?

G: No, then I read a harder story and filled out questions. The stories kept getting harder.

Mom: How many stories?

G: I did about five. The last story was full of words I didn’t know so I couldn’t answer the questions. I guessed.

Mom: Was that the end?

G: Yes, I got paid $50, which you still owe me. [Payment was in the form of Border’s gift cards. We, as parents, have agreed to give cash in exchange for the gift cards.]

We’re participating in research on reading and reading difficulties performed by the Gabrieli Lab at MIT in Cambridge, MA. Well, the kids are participating. The Gabrieli Lab’s studies are designed to investigate the behavioral and neural basis of reading and reading impairments. My understanding of what that means is vague. They hope the results of their studies will help them to better understand dyslexia and benefit people with dyslexia in the future. I can understand this purpose. I really do hope the studies will benefit people with dyslexia in the future – perhaps my grandchildren or great grandchildren.

For the kids, the incentive for participating in the studies: payment – although this comes in the form of Borders or Barnes and Noble gift cards! The drawback: books or bookstores do not motivate my dyslexic kids! The solution: parents give cash in exchange for gift cards. The result: happy kids! Books purchased so far: Frommer’s Hong Kong – an up-to-date guide published in 2001. It looks good. Books to be purchased very soon: Frommer’s China or other guides. Guess where we’re headed this summer for an educational summer vacation!

As the Gabrieli Lab’s studies are looking at people with and without reading and language difficulties, all three of our children are involved. We provided information for eligibility. The studies involve two trips to the Gabrieli Lab at MIT. The first trip requires giving developmental history details, between 2-4 hours of diagnostic testing and providing spit in a cup for DNA collection. The second trip entails MRI and/or EEG brain imaging – fMRI that captures images of the brain painlessly & non-invasively using magnetic fields – that also take two hours. A stop at Chipolte, added to either trip, on the way home is preferable!

I have to recommend the BBC3 documentary Kara Tointon: Don’t Call Me Stupid. It was shown in the UK as part of a Born Survivors Season – aptly named for those who have dyslexia and have difficulty reading, spelling and writing in an education system and world that requires all these things. The episode follows the UK actress Kara Tointon as she discovers more about her dyslexia.

I have watched the documentary twice now, once with my husband and then with my three children, two of whom have been diagnosed with dyslexia.

As a parent I found it emotional viewing – the tears welled up in my eyes on a number of occasions. But be encouraged, as I was, that you join an army of understanding and supportive parents, like Kara’s parents.

For my own “survivors” it was an opportunity to see someone like them who was cheerful, attractive, optimistic and determined. As they entered Kara’s life, there was an air of dignity in their comments that lifted the stigma of not being good readers and writers. They could relate so well to her experience, particularly the diagnostic testing.

But the documentary also features someone who was not diagnosed with dyslexia as a young boy until much later in his life. His survival story is tinged with sadness for all those people whose life story is similar. It makes “Don’t Call Me Stupid” important viewing for the population who are uneducated about dyslexia to begin their education – for them to raise a red flag and consider the cause when they may have misunderstood a person and called him or her stupid.

So, if you’ve reached the point of frustration and wish there was some way this BBC documentary could be aired in the USA, be thankful for YouTube: